Welcome! We Are a Patient-To-Patient Support Community for People Living with Chronic Pelvic Pain.
Living with Chronic Pelvic Pain is a dedicated patient-to-patient support community for patients and families affected by Chronic Pelvic Pain. Living with Chronic Pelvic Pain is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with chronic pelvic pain disorders. If you or your family has been affected by Chronic Pelvic Pain Disorders, consider Living With Chronic Pelvic Pain your second home. Living With Chronic Pelvic Pain , as well as the rest of BensFriends.org’s patient communities, is free for members to join.
Chronic Pelvic Pain is an Umbrella term to describe chronic pelvic pain including: Interstitial Cystitis, Endometriosis, and PolycysticOvary Syndrome. Chronic Pelvic Pain (CPP) is commonly defined as non-malignant intermittent or continuous pain in the lower abdomen, pelvis or intrapelvic structures, lasting at least 3–6 months. If non acute and central sensitization pain mechanisms are present, the condition is considered chronic, regardless of the time frame. Central sensitization is characterized by amplification or increased sensory perception, where stimuli that are normally not painful are now perceived as painful. CPP is in women not exclusively associated with the menstrual cycle, sexual intercourse or pregnancy, but is sufficiently severe to cause functional disability or to lead to medical care.
Epidemiologically CPP has a greater incidence in women than in men, and is mostly present between the ages of 36 and 50 years. The etiology of CPP however is not clear. It can be difficult and complex to determine the cause of pain; in fact, no specific cause may be discovered. Many women are not able to identify a specific set of problems which can cause problems and allow for the diagnosis to be made. CPP may originate from one or more organ systems or pathologies and may have multiple contributing factors. It usually involves an interaction between the gastrointestinal, urinary, gynecologic, musculoskeletal, neurologic and endocrine systems. It can also be influenced by psychological and sociocultural factors.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 18, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. Since many of our members deal with rare diseases, they often encounter medical practitioners who […]
- Spotlight on Our Moderatorsby BF_Writer on March 30, 2023
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think that’s one of the ways our forty-some community network is special. Each community reflects the needs of members and the personality of its […]
- “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awarenessby BF_Writer on March 29, 2023
Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National Park. McKenna caught her first West Slope Cutthroat Trout You Can’t Rollerskate in a Buffalo Herd! Nothing cooler than running into the main herd at […]
- When “Rather Rare” Becomes “Done Well”by BF_Writer on February 22, 2023
Ben Munoz – November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.” Imagine, if you will, that 8th grader, well into the school year, dealing with all of the middle […]
- Our New Ben’s Friends Classroomby BF_Writer on January 26, 2023
Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides. It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are […]
